A Welcome Letter from Ron Davis - Open Medicine …...A Welcome Letter from Ron Davis Dear Friends, I want to personally welcome you to this day of presentations by a group of superb

A Welcome Letter from Ron DavisDearFriends,

Iwanttopersonallywelcomeyoutothisdayofpresentationsbyagroupofsuperbscientists!Igreatlyrespecteachofthemandamalwaysimpressedwiththeircreativity,dedicationandrigor.I’mexcitedtohavethemalltogether,analyzingandintegratingallofourdata,brainstormingandthinkingoutoftheboxabouthowtoputitalltogether,andplanningnextstepssothattheresearchcanmoveasfastaspossiblewiththemostqualifiedscientistsdoingworktheyaregoodattocurethishorriddisease.

AsIlookatmyson,Whitney,myheartcriesforhissufferingandthenitconnectstoallofyoupatientswhosufferwithhim.

AsIwatchmywife,Janet,caringforoursonintotheearlymorninghours,givingupsomuchofherlife,Ithinkofallyoucaregiverswhowalkwithheronthispathcaringforyourlovedones.

OfcourseIamconstantlythinkingofallyoudoctorsandscientists,tryingtoabsorballthedatayouhavecollected,feelingallofourpainatthepainstakingprocessthatnevermovesfastenough,andtryingtofindthebesttojoinourcollaboration.

Andtoallofyoudoctorsoutthere–I’mincrediblygratefulforyourdedicationtocaringforthesepatientswhenitissohardandsolittleisknown,andI’mthrilledthatyouareheretryingtolearnmoresoyoucanbringitbacktoyourpatients.

Finally,I’mgratefulbeyondwordsforthegenerosityofthedonorswhohavecontributedtothisresearch,becauseyoumakeourprogresspossible.I’mespeciallygratefulforLindaTannenbaumandtheOpenMedicineFoundationfortheirtirelessworkinraisingthefundsthatenableustodothiswork,andformakingthissymposiumpossible.Thankyoufromthebottomofmyheart.

Weareallinthistogether.Ihavenodoubtthatwewillfigureoutwhathasgonewronginthebodiesofpatientswiththistragicdisease,andfindtreatmentsthatwillworktomakeitbetterorsomedaycureit.

Ihopeyouenjoythiswonderfulpanelofscientiststhatwehavegathered.Manyofthemarenotpeopleyouhaveheardofbeforeinthisfield.IhavechosenthembecauseIbelieveweneedtogarnerexpertisefromperipheral,butrelated,fieldsofstudy,openourmindstonewthoughtsandinformation,andnurtureout-of-the-boxthinkinginordertobreakopenthisfield,unravelthemysteriesofthisdisease,andfindacure.Ihopethisdayleavesyouinspiredandhopeful!

Sincerely,

SymposiumChairProfessorofBiochemistryandofGenetics,StanfordUniversitySchoolofMedicineDirector,StanfordGenomeTechnologyCenterDirector,ChronicFatigueSyndromeResearchCenteratStanfordUniversityDirector,OpenMedicineFoundationME/CFSScientificAdvisoryBoard

Community Symposium on the Molecular Basis of ME/CFS

Sponsored by the Open Medicine Foundation: http://omf.ngo/community-symposium

Saturday, August 12, 2017 at Paul Brest Hall, Stanford University

08:00a.m. Registration

09:00a.m. Welcome:LindaTannenbaum,CEO,OMF

09:03a.m. SymposiumLogistics:AshleyHaugen,EventOrganizer

09:05a.m. OpeningRemarks:RonaldW.Davis,PhD,StanfordUniversity

09:10a.m. KeynoteAddress:RobertKNaviaux,MD,PhD,UniversityofCalifornia,SanDiegoThemetabolismofthecelldangerresponse,healing,andME/CFS

09:30a.m. ChrisArmstrong,UniversityofMelbourneME,metabolismandI

09:50a.m. JonasBergquist,MD,PhD,UppsalaUniversityInsearchofbiomarkersrevealingpathophysiologyinaSwedishME/CFSpatientcohort

10:10a.m. BREAK

10:40a.m. MaureenHanson,PhD,CornellUniversityProbingmetabolisminME/CFS

11:00a.m. NeilMcGregor,MDSc,PhD,UniversityofMelbourneGenome-wideanalysis&metabolomechangesinME/CFS

11:20a.m. AlanLight,PhD,UniversityofUtahGenevariants,mitochondria&autoimmunityinME/CFS

11:40a.m. PanelDiscussion:MorningSpeakers

12:10p.m. LUNCH

01:30p.m. BaldomeroOlivera,PhD,HowardHughesMedicalInstitute&UniversityofUtah Anovelsourceofdrugs:thebiodiversityofoceans

01:50p.m. MarioCapecchi,PhD,NobelLaureate;HowardHughesMedicalInstitute&UniversityofUtahTheroleofmicrogliainneuropsychiatricdisorders

02:10p.m. MarkDavis,PhD,HowardHughesMedicalInstituteandStanfordUniversityIsCFS/MEanautoimmunedisease?

02:30p.m. BREAK

03:00p.m. AlainMoreau,PhD,UniversityofMontrealNewresearchstrategiesfordecodingME/CFStoimprovediagnosisandtreatment

03:20p.m. WenzhongXiao,PhD,MassachusettsGeneralHospital,HarvardMedicalSchoolBigdataanalysisofpatientstudiesofME/CFS

03:40p.m. RonaldW.Davis,PhD,StanfordUniversityEstablishingnewmechanisticanddiagnosticparadigmsforME/CFS

04:00p.m. PanelDiscussion:AfternoonSpeakers

ClosingRemarks:

04:30p.m. LindaTannenbaum,CEO,OMF

04:35p.m. RonaldW.Davis,PhD

05:00p.m.–RECEPTION6:00p.m.

RonaldW.Davis,PhDEstablishingnewmechanisticanddiagnosticparadigmsforME/CFS

Dr.Davis,SymposiumChair,isProfessorofBiochemistryandGeneticsatStanfordUniversitySchoolofMedicine,DirectoroftheStanfordGenomeTechnologyCenter,DirectoroftheChronicFatigueSyndromeResearchCenteratStanfordUniversity,andDirectoroftheOpenMedicineFoundationME/CFSScientificAdvisoryBoard.Dr.DavisholdsaPhDinchemistryfromCaltechandisamemberoftheNationalAcademyofSciences.Throughouthiscareerhehasmadenumerousseminaldiscoveriesthathaveacceleratedgenetics,genomics,andbioengineering,includingover70patentedtechnologiesthat

havelaunchednumeroussuccessfulcompanies.HiscontributionshavebeenrecognizedbytheGruberGeneticsPrize,theGeneticsSocietyofAmericaMedal,theWarrenAlpertPrize,andthePersonalizedMedicineWorldConferenceLuminaryAward.In2013,hewasnamedoneofthe7World’sGreatestInventorsbyTheAtlantic.

RobertNaviaux,MD,PhDThemetabolismofthecelldangerresponse,healing,andME/CFS

Dr.NaviauxisProfessorofMedicine,Pediatrics,andPathologyattheUniversityofCalifornia,SanDiego(UCSD).Heisthefounderandco-directoroftheMitochondrialandMetabolicDiseaseCenter,formerPresidentoftheMitochondrialMedicineSociety(MMS),andafoundingassociateeditorofthejournalMitochondrion.Heisaninternationallyknownexpertinhumangenetics,inbornerrorsofmetabolism,metabolomics,andmitochondrialmedicine.Dr.NaviauxdiscoveredthegeneticbasisofAlperssyndrome,theoldestMendelianformofmitochondrialdisease,anddevelopedthefirstDNAtestto

diagnoseit.HestudiedbiochemistryatGeorg-AugustUniversityinGöttingen,Germany,andreceivedhisMDandPhDinGeneticsandVirologyfromtheIndianaUniversitySchoolofMedicine.HeiscurrentlythedirectorofthefirstFDA-approvedclinicaltrialtostudythesafetyandtesttheeffectsofsuraminonbehaviorandlanguageinchildrenwithautism.Dr.NaviauxisamemberoftheOMFScientificAdvisoryBoard.

ChrisArmstrongME,metabolismandI

ChrisArmstrongisabiochemistryresearcherattheUniversityofMelbourne.HebeganresearchintoME/CFSin2010asanhonoursstudent.In2011hebeganaPhDtopioneertheapplicationsofmetabolomicstostudyME/CFS.HepublishedthefirstcomprehensiveME/CFSmetabolomicsstudyonbloodandurinein2015.Thesestudieswerefirsttorecogniseanalterationinenergy,aminoacidandpurinemetabolisminME/CFSpatients.Overall,hisresearchhasledtobiochemicalfindingsthatrepresentthecellularreactiontoachronicstressorinME/CFSpatients.Currently,ChrisismonitoringME/CFS

patientslongitudinallytodeterminehowmetabolismalterswithsymptomseverityonacase-by-casebasis.

JonasBergquist,MD,PhDInsearchofbiomarkersrevealingpathophysiologyinaSwedishME/CFSpatientcohort

Dr.BergquistisaFullChairProfessorinAnalyticalChemistryandNeurochemistryattheDepartmentofChemistryatUppsalaUniversity,AdjunctProfessorinPathologyattheUniversityofUtahSchoolofMedicine,andDistinguishedProfessorinPrecisionMedicineatBinzhouMedicalUniversityinYantai,China.Hisgroupiscontinuouslydevelopinggeneralanalyticaltoolsforscreeninganddiscoveryofbiomarkersofpathologicalstates.Theseapproachesincludeidentifyingrelevantclinicalapplications,advancedsamplepretreatment,multidimensionalliquidbasedseparation,highresolutionmassspectrometry,and

multivariatedataanalysis.Dr.Bergquiststudiesnumerousconditions,includingneurodegenerativedisorders.HisresearchintoME/CFSisfocusedoncharacterizingtheneuroimmunologicalaspectsofthediseaseusingproteomicsandmetabolomics,withaspecialinterestincerebrospinalfluidstudies.

MaureenHanson,PhDProbingmetabolisminME/CFS

Dr.HansonistheLibertyHydeBaileyProfessorintheDepartmentofMolecularBiologyandGeneticsatCornellUniversity.ShepreviouslywasontheBiologyfacultyattheUniversityofVirginia,Charlottesville.SheholdsaPh.D.inCellandMolecularBiologyfromHarvardUniversity.HerlabiscurrentlycarryingoutcollaborativestudiesonME/CFSconcerninggeneexpressioninimmunecells,mitochondrialDNAvariation,dysbiosisofthegutmicrobiome,andmetabolomics,andtheeffectofexerciseoninflammatorymarkers,metabolismandphysiology.SheisDirectoroftheCornellCenterfor

EnervatingNeuroimmuneDisease.Dr.HansonisamemberoftheOMFScientificAdvisoryBoard.

NeilMcGregor,MDSc,PhDGenomewideanalysis&metabolomechangesinME/CFS

Dr.McGregorisamemberofthefacultyattheUniversityofMelbourne,FacultyofMedicine,DentistryandHealthSciences.HegainedhisPhDattheUniversityofSydneyin2000andhaspublishedover60papersinpeerreviewedjournals.Hisareaofresearchismetabolomics,microbiomicsandgenomics.Hisinterestisindocumentingtheinteractionsbetweenthebiochemistryidentifiedwithineachofthesemethodsofanalysesofhumantissuesandhowtheymayrelatetothepathophysiologyofthediseasebeingstudied.Hewasaco-editorof“ThejournalofChronicFatiguesyndrome”alongwithProf

KennyDeMeirleirforaperiodof6-7years.

AlanLight,PhDGenevariants,mitochondria&autoimmunityinME/CFS

Dr.LightisaProfessorofAnesthesiologyandNeurobiologyandAnatomyatTheUniversityofUtah.HeisamemberoftheUniversityofUtahprogramsinNeuroscience,theBrainResearchInstitute,andthePainResearchCenter.Dr.Lighthaspublishedover120peerreviewedresearcharticlesfocusedonperipheralandspinalcordmechanismsofpainandfatigueprocessing(20recentlyonME/CFS).HereceivedaJavitsAwardfromNIHforhisresearchondescendingcontrolofpain.Hiscurrentfocusisonthemechanismsofthesensationsofmusclepainandfatigue,andtheplasticitytheyundergofollowing

inflammation,injuryandindisorderssuchasME/CFSandFibromyalgiaSyndromes.

MarioCapecchi,PhDTheroleofmicrogliainneuropsychiatricdisorders

Dr.Capecchiwasawardedthe2007NobelPrizeinPhysiologyorMedicineforhispioneeringworkindevelopingagene-targetingtechnologyinmice,whichhasbeenusedtocreatemousemodelsforhundredsofdiseasesincludingcancer,revolutionizingmammalianbiologyandourunderstandingofdiseasegenetics.HeisaDistinguishedProfessorofHumanGeneticsandBiologyattheUniversityofUtahSchoolofMedicineandaHowardHughesMedicalInstituteInvestigator.Dr.CapecchiholdsaPhDinbiophysicsfromHarvardUniversity,whichhecarriedoutinDr.JamesWatson’slaboratorystudying

themechanismsofgeneandproteinexpression.Hiscurrentresearchinvolvesinvestigatingthemoleculargeneticcausesunderlyinghumandisordersinvolvingtheimmunesystemandthebrain.Inadditiontonumeroushonorsandawards,Dr.CapecchiisamemberoftheNationalAcademyofSciences,theEuropeanAcademyofSciences,theAmericanAcademyofArtsandSciences,andtheNationalAcademyofMedicine.HeisalsoamemberoftheOMFScientificAdvisoryBoard.

BaldomeroOlivera,PhDDr.OliveraisaDistinguishedProfessorofBiologyattheUniversityofUtahandaHowardHughesMedicalInstituteInvestigator.HeisalsoanAdjunctProfessorattheSalkInstitute,LaJolla,CaliforniaandattheMarineScienceInstitute,UniversityofthePhilippines.Dr.Oliveraresearchestheionchannelsandreceptorsthatmediatesignalinginthenervoussystem.Throughhisstudiesofneurotoxinsproducedbypredatoryconesnails,Dr.Oliverahasbeenabletodevelopanumberofpaindrugs,includingonewhosesyntheticformisnowusedtotreatpaineffectivelyinpatientswhohavebecometoleranttomorphine.

Dr.Oliveraispassionateaboutinterdisciplinaryscienceandeducation.HeholdsaPhDinbiophysicalchemistryfromCaltechandisamemberoftheNationalAcademyofSciencesaswellastheOMFScientificAdvisoryBoard.

MarkDavis,PhDIsCFS/MEanautoimmunedisease?

Dr.MarkM.DavisistheDirectoroftheStanfordInstituteforImmunology,TransplantationandInfection(ITI),aProfessorofMicrobiologyandImmunology,andaHowardHughesMedicalInstituteInvestigator.HereceivedaB.A.fromJohnsHopkinsUniversityandaPh.D.fromtheCaliforniaInstituteofTechnology.Dr.DavisiswellknownforidentifyingmanyoftheT-cellreceptorgenes,whichareresponsiblefortheabilityofthesecellstorecognizeadiverserepertoireofantigens.HiscurrentresearchinterestsinvolveunderstandingthemolecularinteractionsthatunderlieTcellrecognitionandthechallengesof

humanimmunology,specificallya“systemslevel”understandingofanimmuneresponsetovaccinationorinfection.Hehasreceivedmanyhonorsandawards,includingmembershipsintheNationalAcademyofSciencesandtheInstituteofMedicine,ThePaulEhrlichPrize,TheGairdnerFoundationPrize,TheKingFaisalPrize,theGeneralMotorsAlfredP.SloanPrize,andbeingelectedasForeignMembertotheRoyalSocietyofLondon.Dr.DavisisamemberoftheOMFScientificAdvisoryBoard.

AlainMoreau,PhDNewresearchstrategiesfordecodingME/CFStoimprovediagnosisandtreatment

Dr.MoreauisaFullProfessorintheFacultyofDentistry(StomatologyDepartment),cross-appointedtotheBiochemistryandMolecularMedicineDepartmentintheFacultyofMedicineatUniversitédeMontréal.HeservedasDirectorofResearchandChiefScientificOfficerofSainte-JustineUniversityHospital(2013-2016)andwasamemberandVice-ChairoftheAdvisoryBoardoftheInstituteofMusculoskeletalHealthandArthritisoftheCanadianInstitutesofHealthResearch(2010-2016).Morerecently,hewasappointedDirectorofNetworkforCanadianOralHealthResearch.Heisaninternationallyrecognizedexpertonmoleculargeneticsofpediatricscoliosis.Hisdiscoveriesled

tomultiplepeer-reviewedpapers,internationalconferencesasaguestspeaker,severalawardsaswellas45patentscoveringinnovativediagnostictestsandtherapeuticmolecules.Dr.Moreau’smainresearchinterestsalsotargetcomplexadultdiseasessuchasosteoarthritis,osteoporosisandmyalgicencephalomyelitis.

WenzhongXiao,PhDBigdataanalysisofpatientstudiesofME/CFS

Dr.XiaoisDirectoroftheImmuno-MetabolicComputationalCenteratMassachusettsGeneralHospital,HarvardMedicalSchool.Hisresearchisattheinterfaceofcomputation,genomicsandmedicine.Amajorbottleneckofgenomemedicinetodayisarounddataanalysis,interpretation,andintegration.Hisresearchinterestistodevelopapproachestoaddressthesechallengesandtohelptranslategenometechnologiestobetterdiseasediagnosis,preventionandtherapeutics,especiallyinstudiesofhumanimmuneandmetabolicdiseases.IncollaborationwithresearchersatStanfordGenomeTechnology

CenterandOpenMedicineFoundation,hislabhasbeenanalyzingtheBigDataSeverelyIllPatientStudyandotherstudiesonME/CFS,andcomparingME/CFSwithotherdiseases.Dr.XiaoisamemberoftheOMFScientificAdvisoryBoard.

For more information visit www.iom.edu/MECFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)Key Facts

What is the prevalence of ME/CFS?

• ME/CFS affects 836,000 to 2.5 million Americans. • An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true

prevalence of ME/CFS is unknown.• ME/CFS affects women more often than men. Most patients currently diagnosed with ME/CFS are

Caucasian, but some studies suggest that ME/CFS is more common in minority groups.• The average age of onset is 33, although ME/CFS has been reported in patients younger than age 10

and older than age 70.

What are the symptoms and other effects of ME/CFS?

• There are five main symptoms of ME/CFS:1. Reduction or impairment in ability to carry out normal daily activities, accompanied by pro-

found fatigue;2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);3. Unrefreshing sleep; 4. Cognitive impairment; and5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve

when the person lies back down). • Other common manifestations of ME/CFS include pain, failure to recover from a prior infection,

and abnormal immune function. • At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness.• Symptoms can persist for years, and most patients never regain their pre-disease level of health or

functioning.• ME/CFS patients experience loss of productivity and high medical costs that contribute to a total

economic burden of $17 to $24 billion annually.

KEY FACTS FEBRUARY 2015

What are the challenges in improving diagnosis and care for ME/CFS?

• The cause of ME/CFS remains unknown, although symptoms may be triggered by certain infections. • Although there are therapies available to manage symptoms of ME/CFS, their efficacy is not known.

There is no existing cure for ME/CFS.• There is an urgent need for more research to discover what causes ME/CFS, understand the mecha-

nisms associated with the development and progression of the disease, and develop effective diagnos-tic markers and treatments.

Copyright 2015 by the National Academy of Sciences. All rights reserved.

Controls

CFS

Minimum exercise

makes me tired

Drained after mild activity

Soreness after non-strenuous

activities

Dead feeling after exercise

Mentally tired after slightest

effort

7%

86%

2%

85%

4%

83%

5% 4%

83%

69%

FIGURE 1 Percentage of ME/CFS patients and healthy controls reporting post-exertional malaise symptoms of at least moderate severity that occurred at least half of the time during the past 6 months.

NOTE: See the complete report for note and source information (available at www.iom.edu/MECFS).

Why is a new name for ME/CFS needed?

• Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.

• The term “myalgic encephalomyelitis” is not appropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.

• The Institute of Medicine (IOM) committee recommends the name systemic exertion intolerance disease (SEID) for this disease. This new name captures a central characteristic of this disease—the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in many organ systems and in many aspects of their lives.

To learn more, and to access the IOM committee’s proposed diagnostic criteria for ME/CFS, visit www.iom.edu/MECFS. f

What is ME/CFS?Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is a devastating and life-altering disease that affects up to 2.5 million people in the U.S. alone. Suffering from a host of symptoms that are chronic and incapacitating, patients with ME/CFS have a lower quality of life and higher rates of disability than patients with AIDS, multiple sclerosis, diabetes and rheumatoid arthritis. No cure or FDA-approved treatment exists.

"The word 'hope' is now in my vocabulary again. Thank you Ron and your team for turning on the light at the end of a very, very long tunnel."

— ME/CFS patient

It’s invisible. It’s pervasive. It’s under-researched.We are determined to change this!

The End ME/CFS Project

2.5 million people

affected in the U.S. alone

80% unable to work or attend school full time

25% entirely house-, bed-, or

wheelchair-bound

The Human Genome Project—perhaps themost groundbreaking biomedical project in the last 15 years—succeeded because world-renowned experts in a wide range of disciplines came together and openly shared their research results. Using this model, Open Medicine Foundation has engaged leaders of the Human Genome Project along with researchers from Stanford University, Harvard University, and other leading institutions worldwide to turn their attention to ME/CFS.

The goal of the End ME/CFS Project is to understand the disease at a molecular level. We have already funded the first ever big data study of severely ill ME/CFS patients, using a comprehensive array of cutting-edge molecular, cellular, and clinical technologies. This research has highlighted the complexity of ME/CFS and its metabolic and immunological nature. The ongoing analysis of this rich dataset, and its ongoing expansion to patients of varying severity, will help to identify the molecular defects associated with ME/CFS and potential therapies to correct them. In addition to data generation, this project is also developing low-cost technologies that can diagnose ME/CFS from a blood sample, whichwould be a game changer for researchers and doctors alike. One of these technologies isalready looking promising for both diagnosis and drug screening, and the next step istesting FDA-approved drugs to see which have therapeutic potential. Help us end ME/CFS!

ME/CFS SCIENTIFIC ADVISORY BOARD

Director Ronald W. Davis, PhD Stanford University

David S. Bell, MDME/CFS Pioneer Clinician

Paul Berg, PhD Nobel Laureate Stanford University

Mario Capecchi, PhD Nobel Laureate University of Utah

Mark M. Davis, PhD Stanford University

Øystein Fluge, MD, PhD University of Bergen

Maureen Hanson, PhD Cornell University

H. Craig Heller, PhDStanford University

Andreas M. Kogelnik, MD, PhD Open Medicine Institute

Olav Mella, MD, PhDUniversity of Bergen

Robert K. Naviaux, MD, PhD University of California, San Diego

Baldomero M. Olivera, PhD University of Utah

Ronald G. Tompkins, MD, ScD Harvard Medical School

James D. Watson, PhD Nobel Laureate Human Genome Project

Wenzhong Xiao, PhD Stanford University Harvard Medical School

Open Medicine Foundation® (OMF) is fast-tracking revolutionary research in chronic complex diseases.

Led by Ronald W. Davis, Ph.D.—considered one of the fathers of modern human genetics—and an extraordinary scientific advisory board that includes three Nobel Laureates, six members of the National Academy of Sciences, and other eminent researchers and clinicians, the End ME/CFS Project takes a comprehensive research approach based on collaboration, shared results, and big data analysis. Our lean business model is already fast-tracking revolutionary research and the search for treatments.

Let’s End ME/CFS TogetherAccording to the recent National Academy of Medicine report, ME/CFS is more common than multiple sclerosis, lung cancer, or AIDS. It likely affects one percent of the population worldwide. Despite the high prevalence of this disease, its research receives remarkably little funding from the National Institutes of Health (NIH). The NIH currently spends an average of just $2 per patient per year in research dollars for ME/CFS, which will only increase to $4–$5 per in 2017/2018. It is a disproportionately underfunded disease.

Although OMF has established a strong relationship with NIH in our efforts to advocatefor increased ME/CFS research support, these changes will take longer than we can wait. Open Medicine Foundation has taken on the challenge of filling the gap to fightthis underfunded and under-researched disease. But a great research strategy is only part of the solution.

To advance this ambitious scientific endeavor, the End ME/CFS Project will require a major financial investment from the private sector. We seek contributions from individuals, corporations, and foundations to raise a minimum of $5 million annually for this urgent research. The funds will be used for:

• Sample collection and testing• Computational data analysis with an open access platform• Research project management• Thought-leader consortiums• Informing the medical, research, and patient communities • Fundraising and transparent financial governance

We are determined to reach our goals and with your support, the best minds in their fields will come together in collaboration and groundbreaking research to understand ME/CFS.

Be part of this game-changing effort. Your support will promote revolutionary research to find a diagnostic tool, effective treatments, and ultimately, a cure.

"My son Whitney woke me this morning to inform me that he is dying. He did not say he is dying - he cannot speak. He did not write he is dying - he cannot write. He used Scrabble tiles to spell out his message. He knows he is running out of time. We need research funds TODAY to find answers to save his life and millions of

others.”

To find out more about OMF and the End ME/CFS Project or to donate, visit our website: www.omf.ngo

Follow us!

@OpenMedF

facebook.com/OpenMedicineFoundation

OPEN MEDICINE FOUNDATION®

(OMF) is a

Open Medicine Foundation is a 501(c)(3) non-profit organization. Gifts are tax-deductible to the full extent of the law. EIN 26-4712664

Linda TannenbaumCEO/[email protected]

OPEN MEDICINE FOUNDATION'S

UNIQUE APPROACH

• Prestigious ScientificAdvisory Board

• Global Collaboration:With Scientists,Clinicians, Patients

• Open Model: ShareResults Publicly

• Big Data & InnovativeLow-Cost Technologies

• Focus on Molecular &Cellular Causes vs.Symptoms Research

• Precision MedicineApproach

— Ronald W. Davis, PhD Director, OMF ME/CFS Scientific Advisory Board One of Today’s Greatest Inventors (Atlantic Magazine, 2013)

What is ME/CFS?ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, is a devastating and life-altering disease that affects up to 2.5 million people in the U.S. alone and over 17 million worldwide. ME/CFS can strike anyone, at any age, at anytime. It is a global crisis with 80% of patients unable to work or attend school and 25% of patients are entirely house-bound, bed-bound, or wheelchair bound.

Open Medicine Foundation Founded in 2012, Open Medicine Foundation (OMF) has built a strong community of researchers, patients, parents and caregivers in over 90 countries working toward a shared goal - to cure ME/CFS. As the leader in ME/CFS research, OMF has invested over $6 million in research to date.

"ME/CFS research is progressing faster than ever before, and we have already had some exciting

breakthroughs.We are close to understanding the mechanism. I think we can cure this disease."

Dr. Ron Davis

The End ME/CFS ProjectThe End ME/CFS Project is OMF's first major initiative. Using an open and collaborative model, OMF is leading and funding research to understand the molecular basis of ME/ CFS to identify effective treatments and to ultimately find a cure.

Thank you once again

for your

continued

support. Your donation is

helping OMF make great

strides toward

s understanding ME/CFS,

expand

Scientific Advisory BoardOMF's Scientific Advisory Board is comprised of world-renowned researchers including 3 Nobel Laureates and 6 members of the National Academy of Sciences.

Complex Chronic DiseasesStarting with ME/CFS, we are confident that the End ME/CFS project will shed light on other chronic complex diseases with similar symptoms (fibromyalgia, chronic Lyme, Gulf War illness, Ehlers-Danlos syndrome, autism, and others).

Take Action TodayRegister to receive our news and stay informed - - www.omf.ngo/newsletter-sign-up Like our page @openmedicinefoundation Follow us @openmedf

SCIENTIFIC ADVISORY BOARD

Director Ronald W. Davis, PhD Stanford University

David S. Bell, MDME/CFS Pioneer Clinician

Paul Berg, PhD Nobel Laureate Stanford University

Mario Capecchi, PhD Nobel Laureate University of Utah

Mark M. Davis, PhD Stanford University

Øystein Fluge, MD, PhD University of Bergen

Maureen Hanson, PhD Cornell University

H. Craig Heller, PhDStanford University

Andreas M. Kogelnik, MD, PhD Open Medicine Institute

Olav Mella, MD, PhDUniversity of Bergen

Robert K. Naviaux, MD, PhD University of California, San Diego

Baldomero M. Olivera, PhD University of Utah

Ronald G. Tompkins, MD, ScD Harvard Medical School

James D. Watson, PhD Nobel Laureate Human Genome Project

Wenzhong Xiao, PhD Stanford University Harvard Medical School

Open Medicine Foundation® (OMF) is fast-tracking revolutionary research in chronic complex diseases.

Learn more or donate at www.omf.ngo. Contact us at [email protected].

Open Medicine Foundation is a U. S. 501(c)(3). Gifts are tax-deductible to the full extent of the law. EIN 26-4712664

Join Team OMFAround the world, people in over 90 countries participate in Team OMF to support research and share hope with patients. We invite you to join Team OMF. Donate. Educate. Invite friends and family to donate. Host a fundraising event. Introduce potential funders to OMF. Get involved and give hope to millions.